Policy Strategy and Campaigns

State Level

Transplant Support at the State Level

Transplant support is a set of policies to make it easy to ask for a kidney transplant and easy and attractive to give. State legislation can help further these goals, support kidney donors, and help patients with kidney failure attain life-saving kidney transplants.

We expect this legislation to cost about $8,000 dollars per kidney donor or about $44 million dollars if passed throughout the country. If it increased living kidney donation by only 25%, it would save between $120 and $370 million in healthcare costs per year.

The state legislation we envision has four central prongs:

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“I understand the ethics behind not ‘paying’ for an organ, but I do believe that many donors would consider donating if their expenses were completely covered”
— Amy, donor to her husband

Covering Financial Costs

Covering financial costs of donation such as lost wages, travel, and childcare.

“This donation cost me around $7,000. If you donate a kidney you should be out nothing but a kidney.”
— Jessica, donor to her cousin

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Currently, kidney donors are responsible for any lost wages, travel, and childcare expenses that stem from their surgery. That’s not fair! Many donors lose a month’s worth of wages or more because of their act of kindness. No one generous enough to donate a kidney should have to pay money to save a life. Kidney donation saves the state money by decreasing Medicaid costs and increasing tax revenue from healthy workers. The states should reimburse donors for the costs of their donation.

Luckily, setting up a system of reimbursement should not be hard. The National Living Donor Assistance Center already exists to reimburse travel expenses for donors beneath a certain income threshold. It could easily reimburse lost wages and childcare expenses as well as long as states gave it money to do so.

A system of reimbursement would be inexpensive or even cost-saving. While there’s no definitive figure for the average cost to a donor, studies suggest it is about $2,060.* With 5,500 living donors each year, reimbursing every patient in the country would likely only cost about $11 million. If this increased living donation by even 5%, it would save $22-72 million dollars in health costs each year!

*A 2006 study estimated that 30.4% of donors studied lost wages due to their donation and that their costs averaged $3,104 each. The average donor who misses work tends to miss between 2-6 weeks. Additionally, the average non-wage cost (including travel, follow-up medical appointments, and other miscellaneous costs) averaged $1,115.90. These figures would imply a cost of ~$2,060 per donor.

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“I have to have regular blood tests to check my kidney function. I can’t always afford to do it. I wish follow-up care for donors could be decreased in cost.”
— Wendy, donor to father

Guaranteed Donor Health Insurance

We want states to reimburse a year’s worth of health insurance for any donors who don’t have it prior to donating.

“I had a great experience, but my insurance doesn’t completely cover all the tests my doctor likes to do now that I only have one kidney.”
— Rori, donor to dad

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Guaranteed Donor Health Insurance

Most kidney donors experience no serious complications from surgery, but some do. While transplant recipient health insurance covers some of the costs for some of the time, donors should never have to worry about needing insurance related to their donation and not having it. That’s why we want states to reimburse a year’s worth of health insurance for any donors who don’t have it prior to donating.

The way this would work is for donors who do not have health insurance when they initiate the transplant process (or who lose insurance coverage prior to donation), their transplant center will register that they lack insurance. After that, when they purchase insurance below a certain maximum cost, the donor will submit their receipts to be reimbursed for up to a year after their donation date just as they would have any of their other out-of-pocket expenses reimbursed.

About 11% of Americans do not have health insurance. Silver plans on the individual health insurance marketplace average about $213/month. This implies an average cost per donor of $281.16 for an estimated total cost of ~$15,890 for Maine’s 30 donors.

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“Follow up care is very important for living donors.”
— Ellen, donor to a co-worker

Living Donor Registry

We want each state to collect health and outcome information for every living donor so that the medical field can continually improve its understanding of the benefits and risks of living donation.

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Forming a state donor registry can help with the important task of collecting health and outcome information for living kidney donors. We want states to fund and require registries that will (a) collect basic information on anyone who begins the donation process, (b) survey their knowledge, beliefs, and motivation in donation, and (c) identify what stages they proceed through in the transplant process. For those who become donors, the registry will (a) maintain current contact information, updated annually; (b) collect medical information and workup results each year, following up with donors who have not provided it; and (c) provide donors with a $100 annual stipend each year they provide their workup results for 25 years after donating. After carefully de-identifying personal information, the resulting dataset will be made available upon request to outside researchers.

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“I didn’t have much of an idea what to expect. Education was something we both desperately desired to receive, but did not. Medical professionals need to really talk to donor and recipient – not at them or over their heads.”
— AJ, donor to mother

Independent Transplant Education

We want each state to require every patient who will be medically eligible for transplant to receive high-quality, specialized transplant education.

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As many as 40% of patients with kidney failure who are medically eligible to receive a transplant never seek one. Providing all patients the best in transplant education could increase living donation rates by more than 50% . That’s why we want each state to require every patient who will be medically eligible for transplant to receive high-quality, specialized transplant education.

Currently, the only education these patients are required to receive is from dialysis providers, but these providers are not specialized in educating about transplant, lose money whenever a patient is transplanted, and cannot provide education concerning preemptive transplants obtained prior to dialysis, which provide the best health outcomes.

The patient education requirement would mandate that nephrologists refer all patients medically eligible for a transplant to a specialized transplant educator who meets best practices in transplant education. This educator would conduct house visits to educate patients and their families about living and deceased donor transplant.

We expect this to cost less than $500 per patient. If even one out of fifty patients in the country received a transplant as a result of this education, it would save $67-193 million dollars each year.